11 Days: My Caregiving Story
I don’t usually tell personal stories here, but helping my mom get her caregiving project going has inspired me to tell my own caregiving story. This a cross-post between my blog and my mom’s. Wow, now that’s something I thought I’d never say.
On Sunday Dec. 4, 2011 my mom called me and said Grandma had had a stroke and could I go to Peru. An hour and a half from Muncie. I went.
Mom had just had back surgery and hadn’t been cleared to travel. I cancelled a few classes. My students certainly didn’t complain. I only brought a day’s worth of clothes with me because I didn’t think I’d be there long. She’d had so many little strokes and always bounced back.
I got to the hospital and D. was there with her. She directed the activities at my grandma’s facility, drove everyone around on the bus, held their hands. Grandma was still in the emergency room, waiting for a room to open up. She recognized me and was happy to see me. She couldn’t enunciate really well, but she could communicate. She was a little confused and scared, but she calmed down when I got there. They got her settled into a room.That night I went back to her apartment to sleep. I was told that her doctor did his rounds really early, so I wanted to get some sleep so I could be back by 6 am.
A woman came by and fussed over my grandma, and boy, did she love that kind of attention. I loved my grandma a lot, but I never gave her that kind of clucking, fakey, baby-time attention. I just couldn’t, although as I stood there watching, I had a thought: is she acting more like a granddaughter than I am?
The only thing I regret about the next few days is that I didn’t treat the situation like “Oh no! Grandma’s dying.” And now, I sort of wish I had. I would have stayed in her room at night. She was still alert, responsive, somewhat communicative during that time, and I feel like I missed a chance to have more time with her. But I felt like I needed to take care of myself, too.
It’s amazing how exhausting it is to sit next to someone’s hospital bed.
I arrived to find her soaking wet and agitated. She’d pulled the IV out and the glucose drip was everywhere. I flagged down a nurse and said, “What is happening here? When was the last time someone checked on my grandmother?” I got a vague answer and was told that she’d been combative in the night when the aide came in to take her blood pressure.
“So what?” I said. “She’s had a stroke. She’s not herself. You’re supposed to take care of people. Even the the ones who aren’t nice.”
She said, “I understand.”
It’s true. She was combative. They ran a lot of tests those first few days, a lot of poking and prodding, and she was confused. But if I was there, she’d calm down. I held her hand while she was in the tube getting an MRI—a very interesting (and loud) experience. I held her hand when they put in the catheter—that was really rough. For the first few days, I was able to get her to eat little bits of things like ice cream, take sips of water. And every morning, the doctor would say, “We just have to wait and see if she’s going to turn the corner or not.”
The clucking woman came again, but my grandma couldn’t cluck back. The woman looked at Grandma sadly and turned to leave the room. I wanted to scream at her. Hello! I’m here, too! You could talk to me or ask me how I am or spell me for a half hour so I can get something to eat. But I didn’t say anything, because if you have to say that to someone, do you really want to leave them in charge?
The doctor came in and she wasn’t really responding much, and that’s when he said “You have to start preparing yourselves.” That’s when I called my mom and she said, “I’ll be there in a few hours.”
My mom and dad came, my sister, my brother and his wife. Grandma was so happy to see Mom. They cried together for awhile.
I was swabbing her mouth with that little sponge on a stick. She didn’t respond by sucking on the sponge like she had every other day. I burst into tears, because that’s when I knew she wasn’t really there anymore.
One of her favorite ministers came and we all prayed by her bed and she stirred around quite a bit while he was speaking. Afterward, a family friend offered to stay with her for awhile so we could get something to eat. We had just ordered lunch when she called and said to come back, that Grandma seemed to be slipping away. So we rushed back. Her breaths per minute were way down. We all waited.
I decided it was time for me to leave. My siblings left that day, too. I felt like I’d said my goodbyes to Grandma and that she’d pass very soon.
But Grandma hung on. All weekend long. And into the next week. The hospital had to transfer her back to the nursing home side of her facility because, well, technically, they weren’t caring for her anymore. I talked to Mom every day, and I could tell she was just so tired.
I told her I’d come back to Peru and give her and Dad a break. So, back I went.
I stayed in the room with her that night. They’d placed her on this mattress that automatically inflated and deflated to keep her from getting bed sores. It was kind of a comforting sound. The aides came in every few hours to turn her, keep her mouth moist, make sure she was comfortable. I played some Christmas music for her. I tried to keep the room quiet. At the hospital, people had a tendency to drop by to see her or see Mom and Dad and they’d stay and “visit,” talking really loud. I don’t know, I thought it was rude. So at the nursing home, I put a sign on the door that said, “Quiet please.” That night, she woke up a few times and called for Mom, so I went over and held her hand, let her know someone was there and she calmed down.
The hard thing about that long stretch—from when she ALMOST died to when she did ACTUALLY die—was that there was nothing we could do. We just wanted to keep her comfortable, and so we were hyper vigilant about making sure the staff at both the hospital and the nursing home were doing everything they were supposed to do. I kept track in a notebook next to her bed of when she got her pain meds, when she got turned, etc. We probably drove the staff crazy. But that’s what you do, I guess, when something like that is happening. You console yourself with the things that ARE in your control.
The hospice nurse came to see her. She explained to me what would happen at the end, what signs to look for. I worked up my nerve and asked her something that I realized had been on my mind for a long time. See, I was there when my maternal grandpa died. He woke up right at the end. Grandpa woke up and I think he was a little scared that it was happening. Grandma went right up to him and looked him in the eye and said really something lovely and touching and consoling. He saw her, heard her, and relaxed instantly. And then he was gone.
I asked the hospice nurse if Grandma would wake up like that, when it was time. I didn’t want that to happen and for no one to be there. The hospice nurse said no, that Grandma probably wouldn’t be able to do that. She said I could stay in the room if I wanted at night, but I’d be doing it more for me than for her.
I was so glad I asked that question.
I tried to leave her and went to her apartment. But I set my alarm for just a few hours so I’d wake up and go back. It must have been about 3 or 4 in the morning when I got there. My sister and my mom were scheduled to come back at 6 am. I didn’t go back to sleep. I just sat with her and held her hand. At this point, she was taking in big breaths every so often, but they started to come more slowly.
I sent a text to my mom. “Hurry.”
I watched her breaths slow, and then they stopped.
I’ve never had children, never been in the room when someone came into the world, but I’ve bore witness as two people left it. What made me happy was that I knew for certain that she hadn’t been frightened because I’d been there. I knew her passing was peaceful, and that fact was something I could give to others—Mom, my aunt, everyone.
Honestly, I sort of feel like I was supposed to be there.
She was admitted to the hospital on December 4 and died 11 days later on December 15th. I wish it hadn’t taken that long, but it is what it is.
What’s 11 days, really?
The only flowers at her funeral were poinsettias, and the only people there were us, her immediate family, and the people from town who’d taken care of her. How could we have managed all those years, my family so far away, without those kind people? Some were paid caregivers. Some were neighbors and friends. My mom thanked each one by giving them a poinsettia when they left.
They deserved more than that.
I’m glad I got to take her to a doctor’s appointment or two and hold her hand at the end, but seriously, that’s nothing. A small army of people took care of my grandma during the last 20 years of her life, but I was not her caregiver until the last 11 days.
My story is nothing, really, compared to the stories the real caregivers in this country could tell us.
What is yours? I hope you tell it. I know that these moments feel so keenly private. It’s hard to share them. But believe me, there are a lot of people out there who need and want to hear your story.